Help! Can you have Knee Repacement surgery if you have Fibromyalgia?

Discussion in 'Fibromyalgia Main Forum' started by marw, Feb 7, 2009.

  1. marw

    marw New Member

    I'm sorry to have been off this board so long. I've had injuries and surgeries since I was last here. Both my desperation and my pain level are so high, I can barely do aything.

    There is no cartilage (none!) if my Left knee, and little in the R. I had a scope that just made it worse. Doctors (3 opinions) say I have to have total knee replacemnt. This means the ends of the bones are coated with metal, and plastic disks inserted inbetween.

    I had planned to do it, but then a doc said tha for Fibromyalgia patients the surgery is so painful and that the pain from it lasts so long that I might want to just "live with the pain" I have now, and not get the surgery.

    That is a horrible option! I can't live with this knee pain. The Fibro is bad enough, and the arthritis, too, but this knee pain is acute "screaming" pain, and I often cannot walk.

    My question is have any of you had total or partial knee replacement after you got the Fibro, and if so, did the surgery pain ever go away? Or do you know anybody with Fibro who had this procedure? I can stand it as long as it eventually stops, but I don't want to add any more "forever" pain!

    Please help me. And feel free to answer even if you don't know about this. All information is helpful.
    Thank you----Margaret

    P.S. And I will try to stay on the board to help others more. It is hard with this slow computer (hoping to get a new one soon) and this continuous agony. My docs will only give me 5/500 Vicodin, so I'm also not receiving enough pain meds.

    Thanks again.
  2. 7xgrammy

    7xgrammy New Member

    I have had a knee replacement, hip replacement and fused ankle since being diagnosed. According to my doctors I have had excellent recoveries from all the surgeries. I didn't have any more pain than normals who have the surgery. The most important thing to remember is to do your exercises faithfully. They are the secret to successful replacement surgery.

    Also, my fibro has not gotten worse from having the surgeries.

    Good luck and you will be in my prayers

  3. marw

    marw New Member

    Hi 7xgrammy,

    Thank you so much for your reply. You've no idea what a relief that is to me. The whole thing had been making me crazy.

    Yes, exercise is the key to good recovery, but thank you for reminding me of that. I've had these knees scoped before, and exercises and good physical therapy brought me back to normal. I just have had trouble getting a grip on what will happen with metal inside me.

    BTW: Yours was my first answer in this thread, but I cannot figure out how to get to the other replies. This board has changed format since I was here before. And I really ansious to read all my replies. Thanks!

    And, wow, you've been through a lot, and it sounds like it's all successful. That is good news.
    Best to you----marw
  4. yes I had a total knee replacement, it is very painful I will admit for the first 6 wks. You think OMG what did I do? But then it goes away, you have a long series of PT appts. Get a good therapist.
    I am having a problem with the knee that was replaced, the dr said sometimes it happens, esp. with women, I forget the name but its something with the knee cap but he is watching it.
    Now my right one needs it done and I am trying to put it off, but its causing other problems from walking funny. Good luck, alot of people here do both knees at once and do real well.
  5. cathugs

    cathugs New Member

    I have had total knee replacement in both knees and also my
    left shoulder. I had the shoulder done almost 10 years ago.

    I had right knee done in Nov. 2006 and left one 10 months
    later. (Sept. 2007). I did really well with all.
    It is right painful for a few weeks, but you get better each
    day. The main thing is to really work hard doing therapy.

    The muscles around my knees are tender to the touch, but
    I think that is caused by the fibro. This is nothing compared to the pain
    I had before. I can walk so much better than before and with no

    Wishing you the best (((cathugs)))))))))
  6. marw

    marw New Member

    Thank you both so much for your replies!

    I'm still a little confused about this new board. Am I now supposed to answer each post individually? If so I apologize, because both replies are so encouraging and giving me hope!

    I do have a good therapist. She works with several dance companies and sports teams, so that works for me (since I was once....seems so long ago now....a dancer. btw: I miss those emotion icons....would put in some rolling eyes here....ha,ha. Not that anything is funny about FMS, but it does seem like 2 different worlds to me sometimes.....the "before Fibro" world and the "after Fibro" world.)

    I think I will go ahead with the surgery then, it sounds as though this helps the knee pain, and although painful, the pain would not last forever. I've already been told that the recovery time is long, so I'm prepared for that. Also that this is a painful surgery. That's O.K. just as long as it eventually gets O.K.

    I've also been told that I need to cut back on my regular pain meds for a month before surgery, so they will work better afterwards. This part is almost impossible. I guess I will just keep trying. But you would think they could just give me more afterward, instead of cutting me down now.

    Anyway, thanks much, to you both! And to all who answered. I will keep you posted.


  7. marw well I am getting my knee replaced in april, not looking forward to it, but had an appt yesterday and its time. Why suffer,get it over with and hopefully alot less pain My pain is BEHIND the knee the worst. . Fibro adds into it I really think making the pain more severe after surgery and healing . What surprises me is they get you up right the same day after surgery to stand, then next day WALKING a bit and PT at the hospital.

    Last time they asked me if I had help at home, I did alot, but this time hubby works weird hrs . They did have an extended hospital stay in another area of the hospital for a wk to have PT everyday for those who didn't have help . If my insurance pays for it I will stay as I am afraid of falling alone . The worst thing painwise is getting out of a chair, use a higher one . Get a walker, asking for drinks, food etc is the hardest too, get a cooler in am or afternoon so u don't have to bug people or if there not there. You don't realize with a walker you can't carry things. Although I had a plastic bag that I used , its easier to clutch. let me know when you do it. good luck to u!

  8. mevy

    mevy New Member

    I will tell you it is not a fun surgery at all and there is lots of pain--but after the firsr 6 weeks you will be very very happy. I did have a flare with my fibro and was on alot of pain meds but I am very glad that I had both my knees replaced. I did one in Nov 06 and the 2nd one in Feb 07. I had no choices--like you I couldn't walk, It was well worth all the pain and HELL once you get through it all!! This fibro is hard to deal with-add to it arthritis and HORRIFIC KNEE PAIN-it all becomes unbearable. For me the knee replacements was a no brainer-had to do it. Hope you have the same great results that I had. Keep me posted and I wish you well,
    Good Luck
  9. CarolK

    CarolK New Member

    Hi Margaret... My name is Carol and I've been a member here since 2002... sometimes not writing for long periods of time... but I like to come and read what others have to say. I've had fibro for about 15 years or so... lost track of when it all began. Also arthritus in both knee's.

    I've been through what you are going through... only with me it was BOTH KNEE'S!! I made up my mind that I was not going to be house-bound or wheelchair-bound. Both my knees were bone-on-bone... horrible pain and getting worse with each passing day. My mobility was severly compromised!!

    I had no other choice but to have both knees done... a full replacement on each. The first one was done in Sept. of 2007 and the second knee was done December of 2007! That's just three months apart... but due to insurance problems I had to get them both done in the same year.

    Anyway, YES... IT WAS AN ORDEAL TO GO THROUGH... BUT WELL WORTH IT!! It does take time to recoup but like some others have said here... DO YOUR PHYSICAL THEREPY!! Allow yourself all the time you need to recover... it's a process and you will see improvement with each passing week.

    It's been just a little over a year now and I can now stand, walk and enjoy life alot more with my two new knee's! My doctor told me to allow a full year to get to the point where I no longer think about my knee's as artificial... and he was right. I am 64 and I can do so much more than when I lived in constant agony from both my knee's deteriorating!!!

    Oh and I did try the cortisone shots in the joints... no help at all!! If your doctor recommends that you attend a pre-surgical class on knee replacement then by all means go to it... they cover the whole procedure, what to expect in the hospital and what to expect once you are home... it really helps to inform you!! Get educated about the procedure and you will feel more comfortable!


  10. TropicalGirl

    TropicalGirl New Member

    Hi Marw!

    According to my patients that have had TKA surgery and also suffer from Fibro like the rest of us, they tell me that they are glad that they had the surgery. Patients are usually medicated with Oxycontin 20mg twice a day, along with either a Personal Pain Pump that you can control yourself that runs through an IV, or they usually get 2 Percocets (which are stronger than Vicodin), every 4 hours. Whatever your Dr. decides, pain control is usually highly considered.

    Just one thing that I do want to suggest, especially for your first night after your surgery in the hospital. Ask your nurse to administer your pain meds every four hours or so during the night. Most states don't allow the nursing staff to just administer pain meds without the patient asking for it, but what happens is, you get comfortable, your pain drops and you fall asleep. Then you wake up after your pain has spiked up through the roof! That is what usually is the worst part for the patient during this!

    Good Luck! And I hope you feel better soon!

  11. CarolK

    CarolK New Member

    Just wanted to keep this current so Margaret has time to read it.

  12. marw

    marw New Member

    Thank you, CarolK, for bumping this. I would have searched and hopefully found it, but this is so much easier, especially with my slow computer and "crazy" mouse. Getting a new one soon, at least a mouse, hopefullly a computer also.

    Carol, Fibrobutterfly, Mevy, and Tropical Girl, and everyone who answered also, your help is so very, very encouraging, and taking away a lot of my fear. You can't know how frightened I've been, which is stupid, I guess, but I have almost a Phobia about hospitals....silly, but I had a few bad experiences, and then just totally got so anxious I can hardlly go at all.

    Tropical Girl, do you think it is OK for me to print this thread out (any objections from anyone else,too?)....I very much want to show your answers about the pain meds to whatever doctor I use. If the doc is willing to listen, sometimes they are not. My biggest problem is actually getting the right pain med. I see from what you said that I had not NEARLY ENOUGH, not even for the scope that went awry Dec. 1. I don't know if I said, but that surgery should not have taken place, the surgeon admitted that there was no cartilage in there, and that he made a mistake. I also had general anesthesia, which I don't want again. I've had it before for other procedures, and normally would wake in the recovery room....(it was supposed to be outpatient)....but I awoke 24 hours later in the ACTUAL HOSPITAL! They sai I did wake up in recovery, but was in too bad shape and had to be hospitalized. I have no personal knowledge of what happened as I have no memory of it! No one had left orders for any pain meds....and I do know about the 4 hours apart! Can you imagine? I thought I would die from it. I vomited for 48 hours and became too weak to lift my head. (I also have Migraine, which naturally started from the stress, and which was untreated.) What finally saved me was MY CELL PHONE. I recommend everyone take one to the hospital and keep it in the bed with you. I called my Internist finally, who ordered pain meds, and who ordered Migraine med, and who finally when I begged, told the hospital to let me go home. I was better within 45 minutes of getting home.

    Sorry, I did not mean to do a rant! It just came pouring out, I think because I have had a dreadful time.

    I can fight for Oxycontin or a pump, but the most I'm likely to get is Norco....which is why I wanted to print out this thread. Maybe I should negotiate for my pain meds before I agree to the surgery?

    Anyway, I'm definitely having it. But I am going to take a "care-giver" to the hospital with me, I have no family here with me....I know I will be in-patient for a few days, and I'll need someone to make sure I don't try to leave, big baby that I am!

    Fibrobutterfly, I may be having it at the same time as will probably be the last of March or early April.

    Carol, thank you for that wonderful news that pain gets better. And thank you to everyone for that. Carol, you are so comforting!

    Athough I thought I wanted this surgeon with the great rep (and I could have my back doc who does my epidural injections for back pain) for the Anesthesia....sorry about the spelling....I may get someone else if he does not stop frightening me so about the Fibro. Although I think he is just tryng to prepare me for additional pain, and means well

    I can see, too, that I really need badly to have more education on the whole process. I get a lot from these surgeons that I interviewed on the procedure, but almost nothing on what happens afterward.

    Sorry this post got so long....I didn't mean to write a book here.

    fibrobutterfly, thanks for the tips about being at home, too....never would have thought of those.

    Good luck to all of you, too, and I will definitely be in touch.

    Hugs!!!!-----Margaret (Marw)

    P.S. I'm supposed to get cortisone shots tomorrow, but they never helped before, so maybe I will not do it. The advice I left for someone here about the hotwax tub is not helping much this time with my hands, either. Boy, this OA AND THE FIBRO IS HORENDOUS!

    It's wonderful to know that at least maybe I can get my knees out of pain. ANd I do need to get this one now, because the other one needs it also, just not as bad.

    I edited a couple of times, trying to correct my spelling. (eye roll)
    [This Message was Edited on 02/13/2009]
    [This Message was Edited on 02/13/2009]
  13. TropicalGirl

    TropicalGirl New Member

    I don't see why not, regarding printing this out...but I do want to make the dosing clear so that the Dr.'s don't misread it too fast and automatically shut it down.

    The patient will usually only stay on the Personal Pain Pump for the first 24 hours or so, (that is given through the IV.) During the Pain Pump use, the patient also receives the Oxycontin 20mg by mouth every 12 hours, along with it.

    Once the patient goes off of the Personal Pain Pump, THEN the patient starts in with the Percocet every 4 hours by mouth. They can continue using the Oxycontin 20mg by mouth along with it because the Oxycontin is the long, slow acting; whereas the Percocet is quicker release.

    My best wishes are with you. Good Luck! ;*

  14. CarolK

    CarolK New Member

    Have you asked your doctor about a pre-surgery class about your total knee replacement? If there is none at your hospital where the procedure is done, then go on-line and do a research about knee replacements. There's lots of info on the internet about "tkr's"

    Also, you will need a friend or someone to help you at home once you are out of the hospital. It will also help you to get a walker, a cane and either a toliet that has side rails (kinda of a porta potty) or get yourself a toilet seat that raises the level of your own toliet. trust me the height of your toliet is very important. Most toilet seats in homes are low... and it hurts your knee to set yourself down on a low seat!!!

    I went to a home health care store... one that has wheel-chairs and all sorts of home health care products. I got myself a walker (cause it was recommended in the pre-surgery class) and I definately needed one for several weeks after each surgery!!!! Then once you are steady on your new knee you will need a cane.... and eventually you will not need these.

    Also be sure to discuss with your doctor what his plans are for PAIN MANAGEMENT!! Very important to know what they will do in hospital and at home pain care. YOU HAVE A RIGHT TO HAVE PROPER PAIN CONTROL!!! I was sent home with oxycontin and 10mg vicodin... and I needed them both. Then I got off the oxy and only needed vicodin... and eventually got off everything. Just know that it may take several months for you to continue pain meds until you are better. BE PATIENT AND DON'T BE AFRAID TO ASK YOUR DOCTOR FOR MORE MEDS IF YOU NEED THEM!! REMEMBER MARGARET.... "SHY GETS YOU NOTHING"!!


    I just cannot stress enough how important it is for you to know all the options open to you through presurgery education. It was so helpful to me in aleveating stress... I knew what to expect, I knew my rights and I knew what I could ask for in the area of pain management.

    This is a big surgery so be kind to yourself, ask for help from friends and family!! Don't be shy about that!! Do you have a spouse, friend, family member you can count on for help when you are home?? You will definately need help at home for a while!!

    I just want to encourage you Margaret that you can do this... it's rough but make up your mind that you can get through it and you will. It will give you such relief in the final outcome... but be kind to yourself and cooperate with your own bodies healing process.

    I will say a pray for you! Best wishes and here's to a speedy recovery and a new freedom ahead for you!

  15. munch1958

    munch1958 Member

    To deny someone a knee replacement when they are down to no bone is insane. Bare bone on bare bone is VERY painful.

    I think this doctor is an idiot to cite "fibro" as a reason to sentance you to more pain. Oh, you have chronic pain in your muscles so let's keep on making you have it in your knee too.

    He ranks right up there with those idiot doctors who think you have to be a certain age, like over 65, in order to have a joint replaced. In other words, after you suffer for 10 or 20 more years, I can help you. How DUMB is that? What about your quality of life NOW?

    Sometimes I think the insurance companies are banking on the idea that you may croak from something else during the years they make you wait. Then they won't have to bother spending $75K to fix your joint at all.

    I had my left knee replaced in 2001 at the age of 42. My biggest problem was pain control after the surgery. I was not able to get an epidural during the surgery because of a high bleeding time. It took them several days to figure out they needed to use Dilaudid because I'm allergic to morphine. After I got the right med in my PCA pump, I was just fine. (I'm now Fibro pain free after suffering for over 25 years. Details are in my profile.)

    Be sure to do ALL of the physical therapy exercises. You may think you made a HUGE mistake for the first 2-3 months. But once you learn how to use the new knee you'll be sorry you waited so long to have it done.
  16. OH YES that person that mentioned about your toilet is right on. We actually have what they used to call a handicapped toilet, it is alot higher and I LOVE IT. THAT and getting out of a chair, car or toilet is the hardest after knee surgery My sister has a toilet seat that is really big that raises the height, that works too but love the actual high toilet. Also make sure you move your highest comfortable chair to where u sit alot after coming home after surgery. NO recliners, rocker chairs, a sturdy stable chair! And don't stress it does get easier.

    For me I get so deathly nauseous after surgery for hrs, they give me something but still BARF city. and thats no fun after surgery and being out of it believe me. That and IV, and needles terrify me the most. Don't you wish we just had a magic wand to take all this pain/stress/fibro away!

    I hear you on the horrid pain, I have trouble walking with the pain, alot of mine is behind the knee also.
  17. sniffles

    sniffles New Member

    I understand your problems with surgeons. I had to go to three different surgeons before I found one that understood fibro and how to deal with the extra problems we face. He told me that he would work with me and wanted me to stay a week in rehab after I was dismissed from the hospital. Also, both my pain Dr. and the surgeon said I should get the spinal block instead of being put to sleep. They explained that this keeps only a small part of your body being tramatizied and it cuts down on lots of the pain afterwards. It was unbelievable how I had very little pain right after and even during the week I spent in rehab. The most pain came during the therapy, but I was so determined to get back to walking good, that I just didn't give up. With the help of the spinal block that slowed down the pain and the therapy, they had me walking without even a cane in two weeks. I'm 66 yrs old and when I had it done it was bone grinding agaist bone, so ask your surgeon if he will consider a spinal block for you. I know they sound scarry, but I was asleep when they done the block and so there was no pain.I want to say that lots of people worry about hearing everything that is being done. Well, thats not true, so I hope this might be something for you to talk to your Dr. about. Will keep you in my prayers. Sniffles
  18. CarolK

    CarolK New Member


  19. Mikie

    Mikie Moderator

    It isn't just us; "normals" suffer a lot of pain right after surgery, especially when doing the PT. Once the initial pain subsides, they are glad they did it. I would think that your Fibro is amplifying the pain you are having now from the bone on bone. Once you get the new knee, and you get past the initial pain, you will likely have less pain than you have now. Best of luck to you.

    Love, Mikie